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My Atypical Scabies Symptoms: Unusual Signs of Mites That Doctors Don't Recognize

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Are your scabies symptoms abnormal? Hopefully my story can help.

Are your scabies symptoms abnormal? Hopefully my story can help.

What Are Scabies and What Do They Look Like?

Scabies is a condition resulting from parasitic mites that infest human skin. They are contracted through contact with an infected person, be it as intimate and prolonged as sexual intercourse or as brief as picking up a child at a daycare facility. The scabies mite is usually spread by direct, prolonged, skin-to-skin contact with a person who has scabies. In other words, you can get scabies from even the most casual contact with a stranger—provided they have scabies.

The mites are very small and cannot be easily seen with the naked eye. You probably won't see scabies crawling on your skin; you will only see the symptoms. Their burrow marks are often visible as curvy, grayish lines on the skin. Rashes or pimple-like bumps resembling bug bites may also be present.

Healthcare professionals look for evidence of scabies between the fingers and toes, across the shoulder blades, in the armpits, along the inner elbows and insides of the wrists, around the breasts, waist, genitals, buttocks, and knees, as well as on the soles of the feet. The widespread belief within the healthcare community holds that scabies mites largely avoid the face and scalp. It is also a common belief that these mites are too small to elicit a crawling sensation on the skin, although the body's immune response to the mite, and to the feces and eggs it deposits in its burrow, leads to severe itching.

What Scabies Might Look Like

What Scabies Might Look Like

Misdiagnosed Mites: Doctors Don't Always Recognize Scabies

The above may indeed describe the typical presentation of a scabies infestation, but sometimes scabies do appear on the face and scalp, and sometimes they do cause a tickling, crawling sensation.

My husband and I had a yearlong battle with the scabies mite, one that doctors failed to recognize because our scabies did not "fit the picture."

First, we did not itch at all. In fact, the first odd sensation that both my husband and I felt was a tickle in the nose that simply would not go away, scratch as we may. It persisted for days and then weeks, and finally, an entire year. We also periodically felt an ever-so-slight weight landing on our eyelashes, as though someone had blown a handful of dust in our faces. I had a few bumps on the outer parts of my arm that looked and felt like pinpricks, but my husband had none. We both felt a crawling sensation across our feet and on our legs at various times throughout any given day. The doctors said the symptoms did not resemble scabies and that we should not worry about it. When the symptoms persisted, they even suggested the problem might be in our minds.

So instead of being diagnosed and treated for scabies, we were told it was all in our heads. A suggestion of 'delusional parasitosis' by more than one doctor would seem rather inappropriate given that two individuals with no history of mental illness began experiencing dermatological symptoms within the same week.

What this experience has taught my husband and me is that doctors aren't always right.

When You Think You Have Scabies—But the Doctors Don't

There are seemingly hundreds, if not thousands, of folks out there in cyberspace searching for an explanation for crawling sensations and itchy bites that appear to arise from an invisible culprit. Perhaps we are not the only ones the doctors have misdiagnosed.

After year of suffering unnecessarily, only to discover that the doctors were wrong, my husband and I realized we needed to share our story and offer more accurate information on scabies symptoms.

If this happens to you, you'll have to work harder to help the doctors help you.

Tracking Down the Scabies Culprit

Because we knew it was not all in our heads, we had to find other ways to discover what the invisible culprit was. We began taping our skin whenever we felt a crawling sensation in the hopes of finding something under a microscope. We pressed scotch tape to the spot where we felt something, hoping to collect evidence on the tape. It took a long time to find any proof because these mites spend most of their time under the skin, but we eventually got lucky. We put the tape under the microscope and saw what looked like a mite. We took a picture of what we found and sent it to a mite expert for identification.

The tickling and crawling sensations we felt on our bodies, including our faces, were indeed caused by scabies. A simple Permethrin treatment got rid of the mites after an entire year of suffering, although the treatment drug causes its own immune reaction that sometimes feels as though the parasites are back. We've been told now by others who have had this reaction to the Permethrin that the immunological reaction eventually goes away, but can take months. In any case, it is not nearly as annoying or worrisome as the mysterious mite symptoms, so we are happy.

Scabies Mite

Scabies Mite

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Read More From Patientslounge

Common Dust Mite with slightly more elongated body shape, for comparison

Common Dust Mite with slightly more elongated body shape, for comparison

Diagnosing Scabies and Educating Your Doctor

Worldwide, approximately 300 million people have scabies at any one time. Given the persistence of this parasite and the lack of knowledge on this subject that seems to be pervasive throughout the healthcare community, one can imagine how we feel when we come across the pleas for help posted online by others with similar symptoms going undiagnosed. My suggestion to anyone experiencing unexplained itching, rashes, bumps, crawling or tickling on any part of the body, including the face, is to at least consider scabies. And if your doctor will not cooperate due to a lack of evidence implicating this culprit, find another doc who has more experience with these and other parasites.

Not everyone has the time, energy, resources, or patience to take tape samples, find a microscope, enlist the help of an expert, and visit multiple doctors. However, we're hoping that by sharing our story everyone, including those in the medical profession, might learn something from our experience.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

NotImpossible on July 17, 2020:

Dear Soapbubbles, I've been using Benzyl Benzoate for many months to treat the dreaded S word. It's efficacy is "slow" if I can put it that way, the truth is that nothing works quickly when you've had scabies for a long time. I have read that eggs can be buried up to 10mm under the skin. No lotion is going to deal with that depth quickly. In between the Benzyl Benzoate, I've just started using a lotion I made up. Put about a cup of body lotion, I'm using Nivea, about 3-4 tablespoons of powdered organic sulphur, and about 3-4 capfuls from a bottle of 90% Lactic Acid. Mix it up, and massage well after shower. I noticed the next day, eggs I thought were gone, coming up to the surface of the skin. You can buy wooden sticks used for waxing, cheap from ebay, to "scrape" skin after showering. Press quite hard, yes, it's uncomfortable, but things will come off of your skin. I do this everyday.

Be mindful that if you have any new bumps or sores, the lactic acid will sting, so be careful I take Ivermectin horse paste, by a brand called Equimec, once a week, as this brand is just Ivermectin and nothing else. I'll contine with this program until the wretched things are gone, either way it's a slow process. I find the laundry and cleaning very burdensome on top of the treatments as well.Do go to a fabulous website called Maximpulse, this guy has done all the research on scabies. I have read you can use Benzyl B long term without it losing it's efficacy. Hope this helps with your battle.

Soapbubbles on April 21, 2020:

Hello! I am planning on sharing my story later when I have time to write it all down, but for now I am wondering (in case anyone still checks these comments) if anyone has any experience with benzyl benzoate as a treatment and if those experiences are good or bad? I doubt you will see this @Chikonahoka but I am wondering what treatment(s) you used? And if you know exactly what types of treatment that strain of scabies are resistant to?

I am fairly certain that the benzyl benzoate is working in my case, but as most people here in these comments used permithrin I can't be sure. So I would very much appreciate any input.

Chrismdc on September 16, 2019:

Canola Oil was my unknown problem for many years since 2008 in Austrlalia, i was itchy with the feeling of invisable bugs landing and crawling on me, i had sores on my legs that i must of scratched open during the night, when it first started i thought it was mould, demodex ect and any straw that could be the answer, until food was looked at as a possible cause, it seemed that the attacks were intermittant and through elimination diets i got some relief when certain foods were avoided eg brocolli, cauliflower and mustard but i would still get out breaks until the link to Canola oil was found, which is nearly every processed food and some unprocessed through contamination, they are all from the same botanical family " brassica" so for anyone fighting invisable bugs try avoiding "hard to do" Canola oil and brassica family, PS if a food manufacture uses canola oil in there factory for other products it is most likely the food that isn't labled with a canola oil ingredient is contaminated, if it is labelled attal.

Chikonahoka on March 27, 2019:

I have exactly what you described. Not even the dermatologist at a fancy hospital was interested in an atypically manifestation of scabies. Do you know how I got microscope images of the mites? From my hairdresser of all people. This is why people are losing trust in professionals.

Luckily my best friend is a doctor and I have biology training and we worked it out from reading scabies journal papers. We also learned that in the region I was traveling through, there are scabies strains discovered that are resistant to conventional treatment. So now I’m in long-term treatment based on my friend’s advice, but at this stage it’s hard to tell if the crawly sensation is a revival of the scabies or just my body’s random reactions. So your experience helps.

martinsedition on September 30, 2018:

Hello Original Poster,

Do you have hyperthyroidism or any autoimmune disorder by any chance? I just discovered I may have an autoimmune disorder, and that could be why it took so long for the itch to show up. Or maybe the scabies (if it is) triggered my autoimmune disorder that was not yet a disorder before to develop.

Thanks!

martinsedition on September 20, 2018:

Hello,

Thank you for sharing your experience. Have you thought of asking your doctor, the doctor who diagnosed you with scabies, to write about your experience to a national medical database or something? Because it seems like none of the doctors I have visited have encountered a case like yours. If every doctor in the country knew to look for scabies, even if there was no symptom of itching, that would be helpful. Because then doctors wouldn't keep dismissing me.

My symptoms started around August 2017. The only symptom I had was that it felt like there was something on the back of my neck. It just felt like dirty (I do shower daily, so it's not because I don't shower. Sometimes if I don't go out, I won't shower for that day but this has been a habit of mine since I was young). It just felt uncomfortable, very mildly.

It wasn't only until April 2018, did I start itching. And my itching is not severe at all. I've read horror stories about scabies online; ppl say that the itch drives them mad.

I do not itch daily. I would really liken my itch severity to that of a mosquito's bite itch. It doesn't quite feel like a mosquito's bite itch, but the severity is around that of a mosquito's bite itch.

One time, when I had the cold or the flu, the back of my neck felt, I don't know how to describe it, hurt. It just felt like something was wrong. Like I felt like I wanted to clean my neck really well.

Where I itch: ear, belly button area, butt, hand, around breast area, back of neck.

I have no visual rashes, like you. Nothing. Except for the mild "eczema" that a dermatologist noted around my belly button area. (The dermatologist said it was eczema.)

---

General information:

I am female, Asian. mid 20's.

I do not use perfume, or makeup. I have never used makeup daily. I tried makeup once when I was a younger teen and that was that.

Cleaning products, my mother has been using the same cleaning products for years now. Same laundry detergent as well. My mother likes to buy the same things if it works.

I've had a privileged life (in terms of medical conditions) (aside from head lice I had when I was a kid), so that's why I'm surprised I'm experiencing itchiness out of nowhere. Like I never had to see a dermatologist or a specialist for anything, fortunately. The only times I did go to the doctors were to get a vaccine or to get an annual check up, thankfully.

I have not had any change in my personal care or cleaning products. I use the same shampoo and body wash.

No change in diet.

I do not wear jewelry.

I do not use drugs like cocaine or meth. I do not use any drugs. I do not drink or smoke.

I do not have eczema or a history of skin conditions.

---

I'm not sure what I'm supposed to. I have been to a PCP, and two dermatologists, and all three doctors said it's nothing. Because I don't have any visual rashes, I really can't blame them.

I really do pray that it's nothing because I live with family and I do not want to pass anything onto them. I have read about delusional parasitosis but I do not fit the profile of the usual patient who has delusional parasitosis.

What should I do? :(

It also took me a while to find this article, so it probably was out of pure luck that I found it.

Around Nov 2017, I had written in my journal, "feels like eggs are laying". I had not heard of scabies at that point. I didn't even know what to search for at that point. Because what would I type into google? I didn't itch. I didn't had any rashes. I thought that whatever it was, it was just nothing, and it would go away in time.

RANDALL Lufkin on September 09, 2018:

I've been dealing with scabies for allmost a year I have gone to the hospital at least 9 times a few times that gave me a cream permathin it did work for a very short time I went to the. Hospital yesterday and the doctor said it was a rash when I read that was hisDIAGOSIS I wonted to say you shouldn't even be a doctor I have done everything that you should do be cause I have a low amun situm also in 60 I have documentation and have read so much about this I have them on both arms legs feet I also have had them on my face forhead I don't have much hair they been in my ears shoulders i have dug them from under my finger Nails but when the doctor said it was a rash didn't give m any cream I showed him on my arm we're I could feel them crawling this morning to hey multalplyed I'm really depressed a and can't deal with this any more I really need help I can't deal with this any longer Randy. I haven't found anyone to help me if I can't I can't deal with this e longer thanks Randy.

barbara on July 03, 2018:

well i am grossed out.

Parul on March 16, 2018:

My husband same thing, I trying watch

BRANDY on December 02, 2017:

all my friends and family say im crazy because I do partake in drug use plus I have insomnia so I'm just nuts because of these other issues i have but I bet my life that something is under my skin and on top of my skin i thought bed bugs at first untill i noticed i think they are not only on top but under my skin ive tried to catch some on top of my skin by picking them off I've also used a needle to kind of try to get the ones that are underneath my skin out kind of like if you had a splinter they're not visible all the time it's almost like they come to the surface every once in awhile and when they do mostly it's in my hands my hands go numb and when I try to get them I can almost see them just barely escaping as I'm trying to get them I'm scared to go to to the doctor because they put me in a padded room I'm at the point now where I'm like actually crying because I don't know what to do I don't know what they are and it's freaking me out and grossing me out I want it to go away stop I almost wish I was crazy rather than knowing there's something under my skin but before I go to the doctor talking about my hands go numb and there's something crawling around under my skin I need to have some kind of proof some kind of evidence because everyone that I show so there's nothing there I'm just very nervous and scared somebody please tell me what to do to help me how do I identify what this problem is

Karen Ross on September 10, 2017:

I still am working on my hair. But a big help has been to use plastic gloves an boil all my cloths.

Not just wash in hot water, I put a big pan on my stove an soak my cloths an bed sheets in the boiling water. I use my kitchen sink, Then wash. I do the sheets an clothe everyday. Buy week 3 it has been remarkable. I have not quit yet, I do not trust it yet because my scalp is in my view is not done yet. I am over 65. I got the cream on ebay.

Witsend on August 24, 2017:

LM. I have the exact same problem you had and your post was two years ago. I wanted to know if you've solved it and if so, how? Please message me back!

Thank you!

Lminnoe on August 19, 2017:

I used hiboclens. Working very well so far. Also menthol nasal mist for creepis in nose

Ola on July 30, 2017:

for scabies the best treatment is- dry the infected skin with blow dryer, it kils them instantly and its not itching anymore.Its easy and the best remedy. Also hot shower. Every time you feel the itch blow dry the skin. It will take about 1-2 weeks to get read of them. For the private areas ( inside vagina) the best is hot shower -every time you feel you need to scratch, on the begining it will be 3-4 times a day later -one,twice a day. After shower put the benzyl bazyle. - also inside vagina.

Lynne on July 03, 2017:

I caught scabies from my parents after my father had been in a care facility for dementia. We brought him back to my moms house and had two of the carers from the facility to look after him. My mom started scratching but the doctor said it was just nerves and stress. My dad passed away 2 months after being back home and my mom had developed a rash. The doctor still said it was caused by stress. My mom asked the carer why she was also scratching and she said it was scabies and everyone at the care facility had it. My mom called me to let me know and said she was seeing a doctor to get onto meds. I went to see my doctor and I got the Benzoate cream which she said was really good and first line treatment in South Africa. I used it for 2 weeks and I found it wasn't really helping. I felt a crawling feeling in my nose and eyelashes and my head, also my back and tummy. I also found that my skin was burning it was hard to use above the neck and genital area, I would end up trying to wash it off. I found a supplier of the premitherin cream so ordered that and I have been using it 3 times a week for the last 3 weeks. I use sulphar soap daily to shower and wash my hair. My hair is like straw but I can feel those little things moving at night and still on my face. I am still getting little pin like bites on my body neck and chest. I am so worried about passing it on to my family. I stay on my own chair in the lounge sleep alone in the spare room and have very little skin contact at all with anyone. I hardly even touch my cat or dogs, they all look so sad because they are used to lots of attention. I am seeing a skin specialist in a few days time and hopefully after a skin scrape we can find out what is happening. I am lucky that living where we live I have a cleaner who comes in 3 days a week so everything get a very good clean. otherwise all my stuff is bagged as I use it and washed separately from the rest of the family.

My mom who stays on her own is still struggling with this dreadful disease, I think it must have something to do with our immune systems.

Neglected Scabies Patient on June 22, 2017:

I walked up one morning with my right arm and hand swollen and being unable to move my fingers. The lower level of my left arm was itchy and showed signs of a very tick rush under my skin. I also felt crawling of something inside my eyes, my ears and my nose. I never had any rash before, neither suffered of allergies. I was concerned about the swelling and made with my doctor. my doctor was unavailable, but his replacement saw me, he hardly looked at my swollen arm and rash, but he ordered blood test for liver, kidneys and thyroid..he told me to make an appointment with my doctor for when he was scheduled to return to office, he ignored my symptoms,period. Managed to get an appointment with my physician, but only 2 weeks after my initial consultation.

Because the rash, swollen arm and hand, biting, persistent itching of my head and feelings insect crawling continued, I visited a walk in clinic and was seen by a nice physician who referred me within same clinic to an allergist. The allergist was an older gentleman and at my request he performed the skin test for bed bugs, flees, etc. The test results were negative,reluctantly he tested me at my request for mites, since I explained to the good doctor, that I look at my skin as it is being bitten by some kind of invisible insect that no matter what I do, I cannot see the insect, it was microscopic, well, we awaited 15 minutes after the scratch test and said and done, the 3 scratches he made and in which he applied the serum for mites, immediately risen, the allergist said I had scabies He prescribed Perm 5% cream and the good doctor left for holidays, therefore, there was no way to return to doctor and besides, the allergist seems to be advance in age, semi retired, has not his own practice and only sees patients for a few hours once every week.

I did the treatment as prescribed, my house is clean, clean clean. I have always been clean. I wash my hands often and as needed...no help. On my own, I repeated treatment once more, but had to use 2 tubes of cream, because one tube would not cover my entire head area that now was fully covered, the scabies had spread after the first treatment.

As I continued feeling ill, I visited a local hospital at the ER, after awaiting for nearly 4 hours I was seen by the physician, I explained I had been tested positive for scabies, I was suffering and needed his medical help. I showed him the letter from the allergist explaining I had been diagnose with scabies and that medication was not working for me and to please prescribe oral medication, he pretty well kicked me out of the hospital and told me he did not see any skin rash or swollen areas, he prescribed antihistamines an cream..the hospital staff seemed very interested at not acknowledging the fact I had scabies,you see, hospitals need to follow a certain protocol within the institution in order to avoid infestations, that requires paper work and nobody wants to be the one stuck at filing forms, etc.

I left the ER and went straight to drugstore, when the pharmacist saw me he right away said: what ever happened to you? you have a bad rash and you are swollen,you see, every body could see how bad my skin was.

More than 2 weeks had passed since my initial discovery of scabies until I was able to be seen by my family physician, when he he saw me he refused to see the scabs on my head, he did not even look at the rash on arm and other parts of the body the scabies had moved to and he bluntly told me that I had no scabies because scabies do not go onto peoples heads. He offered me to be sent to a dermatologist, but I awaited, waited and waited and he never did! During the visit he was very uncaring and callous as he had never been, he pretty well told me to go to the allergist, since he is the one that made diagnosis, he was just a physician and he did not know anything to do with scabies. A licensed physician who studied medicine to treat and cure pretty well all illnesses..he did not want anything to do with a person with scabies..I explained to him I contracted with scabies from my real estate clients that were both blind and handicapped and that I had repeated close skin contact with them by way of wrapping my arm around their arm to assist and guide them were to walk with their cane, I explained to doctor I was ignorant to the fact they did carry scabies with them and that pretty well had met and visited their residence many times during the last six months. My clients were clearly negligent at not disclosing their scabies infestation